This is a blog to chronicle the fabulous life of Connor Robertson. Despite the medical challenges that Connor faces at the moment he is a fighter. As his devoted & loving parents we want to see Connor enjoy all the adventures of life. With the wonderful support & love of our family & friends we intend on giving "our little bug" every opportunity in the world. We invite you to join us as we experience the journey together. May God be glorified in our chronicle of Connor's Adventurous Journey!

Saturday, April 01, 2006

So sorry for skipping a day of blogging, but I never got the opportunity to get to a computer. Here's a catch up from yesterday:Connor was running a fever of 103.9 most of the day so they took blood for a culture to see if he was fighting off some kind of infection. So far, nothing has shown up in the cultures and the temp finally came down in the middle of the night on Friday. He is remaining on the c-pap machine for now with only 1 - 2 hour breaks twice a day. Since he is still having a difficulty breathing they feel that the constancy of the c-pap will help him the most.Friday was a wonderful day of visiting for mama. Our first visitors of the day were special friends Shawn and Racquel. We had a great time of girl friend chatter along with a white chocolate mocha (thanks gals!!). This was both of their first times seeing and holding Connor so it was special for all of us to experience cuddle time together. We also received a visit from our special friend Rhonda as well. What a breath of sunshine you are, dear friend. Thanks for the visit and for the blessing of your friendship!!

Yesterday evening was the scheduled birthday date from daddy!! We kissed our little bug good bye around 6:30pm and we headed into Seattle for a comedy show that highlighted the differences between men and women. We had a lot of good belly laughs (which was good for us!) and we even went out for a steak & lobster dinner afterward. Let me tell you, the cafeteria can't hold a candle to that dinner!!! Thanks honey for the wonderful night out, we needed it.

When we returned around 11:30 Connor was still laboring with his breathing. They had to keep him pretty sedated through the night so that he would calm himself down. Today he has been awake off and on, but he doesn't seem as comfortable as we would have hoped from his surgery. The nurses say that it will still take a few more days of healing before we will be able to see much of a difference. Slow but sure they tell us, so we will continue to pray for the best for Connor. They started Connor back on Pedialyte today for 4 hours and he tolerated it quite well. Since about 2pm today he was able to get "mama's milk"!!!! We are so happy to see this transition take place. If he continues to tolerate it, they will SLOWLY begin to increase the volume.

Today daddy got to spend the entire morning alone with Connor. I understand they had many good talks and daddy even rigged up his mobile with his little critters on it so that Connor could watch them zoom by!! Connor told me, after daddy left, that he tells really good stories. I guess daddy was telling Connor all about Abbey and about all the fun times that he has planned for the 3 of them when Connor comes home from the hospital. He even told me that Daddy said we were going to go camping this summer!!! Connor says he has a lot of healing to do before daddy will take him on a trip, but it was evident from our little bug that he wants to work extra hard to get better so he can go. While daddy was with Connor today, mama went out for her annual planting event. Every year Fred Meyer does a plant sale and if you bring in your pots they will plant all your flowers (in the good dirt) for FREE. So now we have the back of the pick up truck filled with planters full of hope!!! Yes, hope!! The hope that they will actually grow. The hope that they will bud and then bloom. The hope that they will flower all summer long. And the hope that they will bring forth a sense of new life!! I can't wait to see the first bud, and then the first flower and to see how it will correlate with Connor's progress. It's always great to plant something so mama got a real dose of encouragement today!!!

Daddy went home with the big truck this afternoon to get all those planters watered and taken care of and he will return with us tomorrow. We are looking forward to a calm and restful night tonight. Oh, by the way, are buddy Brent's story was on King 5 news this morning in the health link section. I hope you all saw it. If you didn't you can go to King5.com and look for the story there. Baby Brent is on his way home today, so praise the Lord for answered prayer for the Emery family!!!! Way to go Brent, you keep getting stronger!!All our love for today, we'll blog more tomorrow.Lovebug Hugs,Lori

Daddy & Connor after surgery with the scope picturestaken while they were doing the surgery.

These two hearts represent Mama's & Daddy's hearts.Since we cannot go into the operating room with Connorwe send our "hearts" underneath his little matress so heknows we are there.

Mama and Grandma share today as their birthday.Here they are blowing out their candles and wishingfor the same thing.......Connor's healing!!

Mama & Daddy in the family room of Children's Hospitalwhere we had a wonderful birthday celebration today.

Mama with both Grandma's!!! Boy, Mama is so blessedto have the best "mom's" in the whole wide world!!!

Little bug wishing Mama a very happy birthday!!!!

As you can see by all these wonderful pictures, today was a full day for all of us. First of all Connor did very well in his surgery. The surgeons were quite pleased that when they went in to do the laser procedure, they decided that just a couple snips of his epiglodus (sp??) would do just fine so that lasers were not neccessary!! He came back to the ICU within an hour and a half and he was wide awake. They will keep the c-pap machine on him for at least 24 hours so that the swelling will go down in his throat and then over the next few days we should see a dramatic improvement in Connor's breathing. Praise the Lord for answered prayer!!

Today was also my birthday, along with Grandma Ruberta. Daddy did a great job at preparing Connor's room for my arrival this morning. There were birthday banners, birthday hats, presents, cards, and even a cinnamon roll with a candle in it for cake!!! Wow honey, you guys made me feel so special. Thanks for going the extra mile to find a card from Connor with little bugs on it and even little bugs on my birthday sack that was filled with Starbursts (my favorite!!)!! I'm looking forward to our night out tomorrow night!!!

My mom, Grandma RaeAnn, along with the help of Auntie Marsha coordinated a fun little luncheon and tea party for us. What fun to be together. Thank you everyone for preparing a superb celebration. Hey, whoever says you can't party at the hospital isn't part of our family!!! Everyone had a hand in helping prepare food and yummies...Thanks so much, Mom RaeAnn, Mom Ruberta, Marsha, Kathy, Maureen, Teresa, Lynette, Heather, and Aunt Sandy. Thanks also to all my special friends who sent comments, emails and phone calls today. I feel your love wrapped around me even when your arms are not present at the moment. Thanks from the bottom of my heart.

Connor is sleeping peacefully at the moment. He just got done with an X-ray to see how his tummy is tolerating the extra air from the c-pap. We'll have results later on tonight, but they expect everything to look really good. We continue to pray for increased strength and healing for our little bug and we also pray that Connor's breathing will be better in no time. We look forward to giving a good report on that really soon!!

Good morning Mama...and HAPPY BIRTHDAY!! Daddy and I are waiting for you to come down to my room so we can have a big party for you and eat this cake...at least that's what Daddy's been calling it but I think its a big cinnamon roll. All I know is ya better hurrrrrry up cause Daddy is starting to druel all over the "cake"....I think he's hungry!

Oh and Mama...I got you some of your favorite things??? But I won't tell...you have to find them in a special bag I got for you???

And one more thing...Mom...I love you and thanks for taking such good care of me...even though it is a hospital I've had lots of fun with you, you make me feel safe with you always by my side....Thanks Mom !

"Lovebug hugs to you Mommy" Connor

ps....Daddy and I have been talking and think that you need to get away for a much needed break and to relax and laugh a little.....so I mad Daddy spend a little money and get you something........? And don't worry about me I'll be just fine OK !

Wednesday, March 29, 2006

Today has been an excellent day!!! Connor was able to stay off the c-pap machine ALL DAY!!!! He managed to get by wonderfully with a high rate of oxygen. Nurse Gretchen was an absolute God-send to us today. She, by the very faithfulness of God, was able to see my need as a mama to have a "normal" day. We had a bath that was not rushed so Connor got to splash and play in the warm water and he absolutely loved it. Auntie Maureen was close by as our photographer (as you can see below with all those cute pics) and I think Connor just wanted to show off for the camera. After his bath we got to lotion him up really good so now he smells like a bonafide baby!!! We even got to dress our little bug in his own clothes!!! Wow, it was so great to see him in his cute little outfit. I realized that I hadn't seen Connor in clothes for weeks. Praise the Lord for nurse Gretchen's compassion for us. She knew it would do mama just as much good as Connor to have this day today!!! When Daddy showed up just moments ago he was smiling from ear to ear when he saw how good Connor looked!!! What a change of perspective just to see him dressed!!

Earlier this morning we were blessed with a visit from our wonderful friend, JoAnn from church. Thanks for your encouragement JoAnn. Your prayer with us was another highlight of our day. Thanks for making us part of your morning as you were off to work!!

Tomorrow will be the day for surgery for Connor. So far they are keeping it at 3pm, but we will update if this information changes!! Little Brent did really well during his first chemo treatment. I spoke with Susan this evening and she said to keep praying because it will be the next couple of days when the side effects could show up. We are trusting God that his side effects would be very minor and that the doctors would be amazed at how well he does.

We are off to bed now to rest and prepare for surgery day. Connor is fast asleep in Daddy's arms and I think I'm going to have to wake up Daddy and bring him to bed. Praise the Lord for a great day with our little bug!! Our prayers are for a good night for Connor too as he gains strength to withstand surgery tomorrow afternoon.

This was me first thing this morning. I actually gotto get out of my bed and into a bouncy seat for thefirst time since I was at home. My nurse thinks I'mkinda finicky because I like it to vibrate and I like tobe bounced. That means you can't walk away onceyou put me in it. I guess I just like having people fussall over me. My mama says I look really cute in mybouncy seat, but I think I look the cutest when mamaand daddy hold me, that's my favorite!!

Bathtime fun with mama and nurse Gretchen &Auntie Maureen. I think this is my mama's favoritepicture because I'm looking right into her eyes. Shesays I melt her heart...I guess that's just what littlebugs do!!!

Cute as can be in my own clothes with my new blankieand my new "little bug" and my little lamb.

Warm & clean and snuggly with my little lamb"bashful" looking over my shoulder. Hey, did yousee that my mama got me a fun new blankie witha cute elephant on it. When I was on the C-papMachine mama and daddy kept calling me a littleelephant because of the hose that was attached tomy nose. When mama saw this blanket, she knewshe had to get it for me. Don't tell anyone this, butI think I have my mama wrapped around my finger.I think they call it "being spoiled", but I just call itbeing loved!!!

Little bug sleeping peacefully with nurse Gretchen close by.

How cute am I in my bath? Mama had to hold upall my cords so they wouldn't get wet. Wow, I'mreally plugged in to alot of stuff!!!

Mama and little bug having a litte "make out" session!!Sssshhhh....don't tell daddy or he might get jealous. Let'skeep it a secret in blogger land, OK. Ha HaWide awake and sharing my binki with my little lamb.

After my bath nurse Gretchen (one of my favorites)brought me a warm towel for my bottom and a warmtowel for my top. Wow....I think this is like going to aspa!! No wonder my mama likes to go to those places!!!

Just a quick message to let you know that we just heard from the operating room that Connor's surgery has been cancelled. They have rescheduled it for 3pm tomorrow. As always, there must be a reason that today was not the best day for Connor to be operated on. We trust God that this is the case and tomorrow will be a better day for a successful outcome. Just before coming up to send this blog I left Connor in the very snuggly arms of Auntie Maureen and he had the cutest little episode of hiccups. He was just squeaking away and he had us all in stiches. I think this little bug is going to have a sense of humor just like his daddy. I will update more later on, but for now that's all we know. Thanks for your continued prayers and concern for our little buddy Brent. He was scheduled to start chemo last night, but it also got postponed until this morning. As of noon, they were still waiting for the treatment to begin. Continued prayers on his behalf are much coveted and appreciated by his family!!!

Tuesday, March 28, 2006

Ok, the name of the surgery that Connor will be having tomorrow is Laryngomalacia. He may also have a bronchiolscope if they feel it is necessary. I just came up from seeing Connor and we were moved again. We are now in another room with a roommate. Connor slept through the entire move and when I left him he was sucking away on his pacifier while he slept. I could have watched him all night, but our sweet nurse Brooke encouraged me to go get some sleep. So off I go to my sleeping closet for a few hours of sleep. I'd say rest, but all you mothers out there know that we do not rest until we know our babies are healthy and happy and tucked into their own beds. Oh for the sweet joy it will bring to tuck my little bug in his own bed in his airplane room!!! Better days in the promised land are on my mind as I tuck my tired body into bed.

Dear friends ~Connor spent the majority of the morning today wide awake and bright eyed. I had hoped that mama could squeeze one of the irresistable smiles out of our little bug, but somehow they must be reserved for daddy only. No such luck for mama today, but I did get to hear the priceless sounds of those cute little baby coos!!! Auntie Maureen was here with us for most of the day and she reminded me to capture all of those sounds in my heart because they only happen for a limited time only. So today, I recorded Connor's sweet voice in my heart and I will replay it on those particularly hard days to remember that there are better days to come.

The Ear Nose & Throat (ENT) team came for an evaluation of Connor today and they did a scope to look for any obstruction of his upper airways. Not surprisingly they did find an occlusion near his larnyx. I will have to get the paperwork to pass on the exact name, but the essence is that he has a "floppy" airway. They were concerned enough about it that they immediately put Connor on the surgery schedule for tomorrow. Yes, that's right, one more surgery. And to think the thing that brought us to Children's Hospital 29 days ago was a fever!! Who would have thought that our journey would take us this far.

We would certainly ask for your increased prayers for tomorrow at 6pm. The surgery is actually a lazer procedure where they will go in through Connor's throat and lazer away at the airway. The procedure is fairly new and was developed by the very doctor who will be preforming it. We have every confidence in Dr. Manning and he believes that this will dramatically increase Connor's breathing ability. The surgery will last only 40 minutes to an hour and he will be away from us for between 2-3 hours in pre-op, surgery and recovery. He will remain on the C-pap machine for at least 3 more days and then as he heals, they will be able to tell, fairly quickly, if the procedure worked for Connor. We are hopeful with the doctors that this is a step in the right direction. Please pray for a steady, accurate hand for our surgeons and for caring hands in the pre-op as they prepare Connor for surgery.

Today when Connor was off the C-pap machine, mama was blessed with snuggle time!! Oh how I love the feel of our little bug in my arms. We look forward to Daddy rejoining us tomorrow night as we will await surgery results together. Thanks, once again, for all of your mighty & powerful prayers. We are forever grateful for your love and support. Tonight our hearts are heavy with prayer for our little buddy Brent who we have mentioned in previous blogs. He is the son of John & Susan, our parking lot trailer buddies and he is starting his first Chemo treatment tonight. If you would, would you please say an extra prayer for 5 month old baby Brent. He needs God's strength and peace tonight as he proceeds with this new treatment for him. We will keep you posted.

Monday, March 27, 2006

Hello Friends ~Today was a day of consultations for Connor. I met with the Pulmonary specialists this morning for over an hour and they started their preliminary assessments of Connor. They were honest from the start that we wouldn't get any results or feedback for a while because they want to observe Connor and assess him over time. They felt that Connor's heart was a very big part of his lung disease and the bottom line came down to the fact that he probably isn't going to get too much better until his heart is fixed.

But, we all know that he can't get his heart surgery until he gains weight and this was another frustration today. When Connor was weighed last night it was reported to me this morning that he only weighs 7lbs 7oz. I was shocked!! I thought we had made it to that 8lb marker that I wrote about a few days ago, but they told me that someone must have caluculated wrong because their records didn't show a weight of 8lbs in his records. UUUGGGGHHHH!!!!!!!!!! I definately had a hard time with that because I thought we were actually gaining weight. The truth is that Connor has only gained 11 ounces since he was born. That measures out to an ounce a week. For those of you who might not get the severity and frustration of that let me put it in clear terms......THAT'S NOT GOOD!!!!!!!!!!!! Connor is working way too hard to stay alive!!! By that I mean that Connor is expending all of his energy breathing so that none of his calorie intake is able to be applied to growth calories!!! How frustrating this is to me!!!!

Needless to say Mama spent the day overwhelmed with the reality of our situation here. I got away for a few hours to get a much needed haircut today. My body was away from Children's Hospital and away from Connor, but my heart and mind were here the whole time. So many of you have been encouraging me to take some time away from the hospital to gain a new perspective and take care of myself. Thanks for the encouragement towards self care, but I never really realized how hard it was truly going to be. During the hours I was gone I struggled with the guilt of not being here and with the realization that Connor would wake up from his little naps and Mama wouldn't be watching over him. Today was a true test of me trusting the nursing staff to care for our little bug. As hard as it was, I did get fresh air. I did see the sunshine and feel the warmth of the sun on my face. I did get a much needed haircut. And I did stop and get a 31 flavors ice cream cone. When I returned, Connor was fast asleep and he looks very comfortable.

We are moving rooms tonight in the ICU. We will now be in room #4143 which is a room right outside the nurses station so they can keep a closer eye on Connor when we happen not to be in the room. It is a private room, so for the time being we won't have any roommates.

Tomorrow we will once again have a meeting with the Cardiac and Pulmonary medical teams to hopefully set a plan in motion for Connor. We will also meet with the Ear Nose and Throat specialist and they will do a scope test of Connor's upper airways to see if there are any obstructions that the x-rays aren't showing. I will keep you posted on our progress tomorrow. Daddy remains at home going to work for the first part of the week and will rejoin us here on Wednesday night.

Let it be known to all those in blogger land that on this the 26th day of March 2006 our little bug has intentionally smiled for the first time!!!! Yippee!!!!!!!!! What a precious gift Randy and I received tonight from Connor!! He had been on the c-pap machine throughout the night again and all day today, but for a brief time they decided to give him a break from it for a couple of hours. During that time Daddy was able to hold Connor. At almost the same instant as being placed in his arms, Randy was talking and smiling to Connor and just then he flashed a big smile right back in Daddy's direction. And where was Mama you ask?? Regretably, I was on the other side of the bed so I didn't see it. But I rushed over just as soon as I heard the squeals from Randy that he had smiled. From that moment on, the next 10 minutes were sprinkled with many smiles and girggles of laughter.

How precious that in spite of all the circumstances here at the hospital, Connor has the ability to show and exhibit joy!!! Just like it says in Proverbs, "A merry heart doeth good like a medicine." Let me tell you, those little bug smiles were like a triple shot of the strongest medicine in the world to Daddy and Mama. I'm sure that Daddy will never let Mama live down the fact that "he" got Connor to smile for the first time. HA HA!! To tell you the truth, I couldn't be happier that it was Daddy that saw that slobery, gummy smile for the first time. I know that it will be a priceless picture he will hold in his heart forever. Just think, the next time Daddy goes out of the country in his airplane, Mama won't have to worry that we haven't been able to get that JC Penny photo done yet because he holds the most precious picture in his heart, Connor's first smile!!!Needless to say, we will go to bed tonight feeling as though this has been the best day of the journey. We feel a bit like we've hit the jackpot because we received a million dollar smile from our little bug!!!

Thanks for the visit today Gary & Lynette, Lucas & Savannah. We had fun visiting with you! Hey Gary, we love your new phone toy!!! That was the coolest thing!! I'm glad Connor was awake for most of your visit so you could see those precious eyes that are as blue as the ocean. Although today was really no different than yesterday as far as progress goes, at least Randy & I were both able to hold him at different times and we were blessed with that cute little smile.

Tomorrow we will be meeting with a Pulmanary Specialist to go over Connor's lung situation. The docs were honest with me earlier today that Connor has significant lung damage. They say it is really just a matter of time for healing and that, more than likely, there won't be any permanent damage. We should get a better feeling of a treatment plan after tomorrow's visit.

I must say goodnight for now as my heart is jumping to return to our little bug for more smiles. Boy oh boy, this little guy sure knows how to melt his mama's heart.

About Me

Hi my name is Connor Scott Robertson. I was born on January 11, 2006. My daddy is a pilot and I think that is so cool. My mommy gets to stay home with me which I think is super neat because we snuggle and cuddle alot. I was born with a special set of circumstances that require me to get some extra special attention from my doctors. I have Down Syndrome and a heart defect called an AV Canal. I have had a pretty eventful 1st year of life. I have been hospitalized most of the time and have spent alot of time in and out of doctors offices. Even though I have had a lot of difficulty so far, I am quite a fighter. My folks say I can do anything I put my heart and mind to and I believe them, because I am fighting really hard to become a big strong boy. Would you all take the time to say extra prayers for me? I know that God listens to our prayers and I believe he will answer our prayers to bring healing to my body. Can't wait to meet you all and have you watch me grow to be a mighty man of God one day.